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The CDC classifies HIV disease progression into 9 stages (3 categories by 3 categories). The purpous of this poll is to get an overview of what stage AIDSMEDS members are currently* in as well as start a discussion around these issues.

Along with your vote, it would be interesting if you replied with some background information such as:

How long have you been infected (if known or best guess)?

How long you have been in your current category?

What other categories have you been in over the course of your infection and for how long?

If you are in Category B or C what OIs did you experience?

...as well as any other relevant discussion regarding HIV pathogenesis

*Note1: The categorization is based on the lowest documented CD4 cell count and on previously diagnosed HIV-related conditions. For example If you had a condition that once met the criteria for Category B (Thrush) but now are asymptomatic, you would remain in Category B.

Note2: If you are unclear as to how the table works, see the discussion below for some examples before you vote.

Being a bit thick I didn't really understand this - I'm either A1 or B1 - I say this because I've always had thrush even before being pos and I had herpes before too with only one outbreak since being pos.

Should I reword the poll? Do you think it is unclear or confusing? If you are currently in A1 or B1 can you change your vote? I attempted to set it up to be flexible so you should be able to view the results without voting and also change your vote afterwards. If not please let me know.

Currently Stage 3 would be my guess * How long have you been infected (if known or best guess)?........ about 22 yrs.

* How long you have been in your current category?............... about 15 yrs or more * What other categories have you been in over the course of your infection and for how long? I have no-idea, that's a very hard question to even answer due to the fact that I currently have AIDS

* What is the trend of your infection, has your progression moved up and down.....?it's all over the MAP, it go's up & down every few years

* If you are or have been in Category B or C what OIs did you experienced? ......Pneumocystis pneumonia Candidiasis involving the esophagus, Cryptosporidiosis, isosporiasis, or microsporidiosis, with diarrhea lasting for 1 month or longer,

* ...as well as any other relevant discussion regarding HIV pathogenesis..........Chronic diarrhea with two or more loose stools daily lasting for 1 month or longer; or along with Chronic weakness and documented fever greater than 38°C (100.4°F) for the majority of 1 month or longer, HIV encephalopathy, characterized by cognitive or motor dysfunction that limits function and progresses.

Hope all of this helps you out some, I did the best I could do, and with everything that has happened to me in the passed 12 to 15 yrs. however I think your poll is kinda VAGUE and somewhat DATED by todays Standards

« Last Edit: November 19, 2010, 04:39:48 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Thanks for the thoughtful reply denb45. I especially appreciate hearing from LTSers as you guys hold a library of information that us n00bs don't understand yet about this disease. For example, I had to modify the working of the poll 10x because it was difficult for me to understand exactly how the CDC classification works but I have a much better understanding of it now. The key that if you have once had a OI then you stay in that category revealed to me about how the classification system is primarily designed to track the progression of the disease (and thus the state of your immune system). I hope others learn as much as they can about this disease, knowledge if power.

That's only the SHORT version of all of the current health problems I have, it would take way too much room for me the go in-depth with current side effect, and a whole host of other problems after so many years, but, I think you get the idea..........

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

That's only the SHORT version of all of the current health problems I have, it would take way too much room for me the go in-depth with current side effect, and a whole host of other problems after so many years, but, I think you get the idea..........

How many different treatments have you been on over the years? How do the side effects of your current regiment compare to those of the past?

I've was diagnosed with HIV on January 9th 2009, and I was probably infected within a year or so before then. So... I've been poz for around three years now, but only diagnosed poz for close to two. I've been in category A2 the whole time. No interesting pathogenesis to note, except for a bitching oral herpes outbreak that left me gargling with viscous lidocaine and barely able to eat.

How many different treatments have you been on over the years? How do the side effects of your current regiment compare to those of the past?

Too many to even count, (if you can name it, I've taken it before) as for side effects, I still have them after 12 to 15 yrs and even longer, so current treatments kinda all give the same results for me, don't get me wrong the AVRs & PIs meds do the job, just not on the side effect part of it, also I now have Stage 3 kidney disease (kidney function is currently @ 58%) from some of the meds thur the years, along with horrible neuropathy in both feet & hands.........so, you see the damage to my body is already done, it simply cannot be fixed, what's done is done......to date, currently I've never been able to break the 350/450 CD4 level, my ID Doctor tell me she thinks, I never will........

« Last Edit: November 19, 2010, 08:26:38 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I'm a B3. Diagnosed in Aug of 2010. I was in a relationship with a positive guy for 2 yrs prior to that so my infection date could be as early as 1/2009. At the time of diagnosis I had thrush. My first CD4 was 73.

Well, I've never been good at reading research papers, charts, etc. Just looking at those tables gave me a headache. So, maybe you can tell me where I fit.

Been poz at least 9 years. Could possibly go back to previous partner in 1995 who now has AIDS, but more likely late August 2001 right before 9/11.

Since diagnosis in Dec '08, CD4 has stayed above 500, except when ill with bacterial pneumonia when it dropped to 171 in Dec '08. However, I've been told to NOT count that 171 as my nadir count as it was just artificially low. I didn't have more than 1 episode of bacterial pneumonia in a 12 month period, so not AIDS defining.

I do sometimes get angular chelitis and will rarely get a very small--very small ulcer on my throat. Seems to come on with stress as does the chelitis. However, I know several HIV negative people who get these same things--including my brother.

I cannot prove this except for my own experience, but I have found that I tend to get Candidiasis after taking strong dosages of antibiotics... the problem being that the antibiotics also kill good bacteria in your stomach and intestines. What I have found is that by adding the good bacteria back into my body with yogurt or Probiotic Acidophilus pills, the Candidiasis goes away quickly. This has happened to me only a few times but has happened after taking antibiotics and do not think it is exactly the same as what the CDC is calling thrush. people without being HIV positive get Yeast infections, so I don't think this is a fair criteria. My Mom had the same issue after taking antibiotics and I gave her some Acidophilus pills and her mouth was better in a few days.If you find yourself with oral thrush, try the Acidophilus pills. I hope this helps somebody.

As for a catagory, I guess I am A1 CD4 above 500, no OIs yet. Positive most likely around 3 years now.

My heart goes out to you guys and girls who have been sick a long time.

cat C: Bacterial pneumonia; Candidiasis of the bronchi, trachea, or lungs; Candidiasis, esophageal; Pneumocystis jiroveci pneumonia (I had this back in 96 when it was still dog pnuemonia. Woof! LOL); Wasting syndrome

But ya know Joe, everyday I wake up, I ask myself, what is the point of just being alive, sometimes I just get sick & tried of being sick, all the time, and for so many years now

I hear you Dennis and I share your frustration with being sick most of the time. For me, if it is not my physical health, it's my mental health causing concerns, however even with all of that, it still does beat being dead. I am just not ready to stop living.

How long have you been infected (if known or best guess)?3- 98 for over 12 yrsHow long you have been in your current category?a1 for about 3 yearsWhat other categories have you been in over the course of your infection and for how long?a2 for about a yeara3 for about 2 monthsboth were due to a hiv study where i was taken off of meds and iwas being very closely monitored.If you are in Category B or C what OIs did you experience?never there yet.to add i have been on 3 differnt combos so far

I hear you Dennis and I share your frustration with being sick most of the time. For me, if it is not my physical health, it's my mental health causing concerns, however even with all of that, it still does beat being dead. I am just not ready to stop living.

LOL........Joe I don't want to die, I just want more control over my side effects (diarrhea, numbness in my hands & feet, fatigue & PDST Kidney problems) it's frustrating getting my ID Doctor to understand & treat all of these, she's a nice Doctor, but, she FAILS at this, and lot of what is wrong with me requires other Doctors, and, it's hard, the waiting periods to see such Doctors keeps on increasing , sometimes I feel that my problems will never get the treatment needed, and that makes my very sad, life can be a real BEAR, but NO I haven't giving up yet

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

What I think everyone is failing to realize, is that once you move down a level, you can't move back up! That is what is meant by the whole even though a patient becomes asymptomatic, they remain at whatever level. Its just like how when a person with HIV progresses to AIDS, even if their CD4 goes back above 200, they'll always be considered to have AIDS. So, if your lowest level was a B2, even if you technically qualify for an A1 now, you're still a B2 and always will be unless you drop further, at which point that will become your new level!

So technically, I'm a C3 even though I thought I had rebounded from AIDS (cd4 of 68 and several OIs). It was my belief that the CDC now reclassifies depending on your current condition, but according to their website, you always are categorized by the worst classification you've achieved. Will that change if they ever find a cure?

« Last Edit: November 20, 2010, 07:09:50 PM by wolfter »

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Complacency is the enemy. Challenge yourself daily for maximum return on investment.

It was my belief that the CDC now reclassifies depending on your current condition.

nope, once a statistic, always a statistic. being labeled and kept with that label, allows for tracking the epidemic and awarding money/supplies towards taking care of the amount of burden of the epidemic in your area.

This is such a weird classification. I had some OI's long, LONG before HIV, and one's nadir CD4 could just as well be a blip or a result of very EARLY detection. Whats the purpose behind this?

You know, I don't really understand how it works very much either, but I just know that's the way it is done. You can go down, but you can't go up. Maybe they will have to change it if they find a cure, but until then, any changes in the way they classify us according to the sickest we've been seems unlikely.

A2•How long have you been infected (if known or best guess)?Feb 2003 dx Aug 2003•How long you have been in your current category?approx 1 year•What other categories have you been in over the course of your infection and for how long?none•If you are in Category B or C what OIs did you experience?•...as well as any other relevant discussion regarding HIV pathogenesis

any changes in the way they classify us according to the sickest we've been seems unlikely.

for one thing, these classifications are used to help state and federal governments determine funding. There are projected budgets (for things like ADAP and Ryan White) for how much someone with a diagnosis of "AIDS" may cost/need. Knowing that a state has X amount of people with an HIV diagnosis compared with the amount of people with an AIDS diagnosis helps in planning those budgets.

Not to mention the personal funding/social services determined by these classifications. Staying classified a the lowest point helps a patient more easily access the medical help for situations that may arise from having physically been at that classification point and suffering from the long-term effects of having been at the physical low point.

A person with AIDS costs more medically to care for and to make healthier, often over a longer time - if not for the rest of their life, than a person living with HIV. Although a person may rise back from a C3 classification, having had the problems in the C3 category often leaves lingering health issues that are not experienced by a higher category.

For example, I was classed as a C3 while in the hospital with PCP. When PCP doesn't kill someone, it can leave lasting lung damage. Although I may "feel" like a B2 now, I have long-term lung damage, PN, and other issues that a person who has only "dropped" to B2 will never experience. My C3 experience makes my current situation that seems to be B2 actually be "B2*", ie with issues left-over from my C3 experience. By retaining my C3 classification, not only are doctors on the lookout for the long-term fallout of meds and health problems from being C3, but social services are more easily accessed when I need them because I have already used them and I have not lost them by being re-classified.

Statistically there classifications also help in seeing areas where late diagnoses are a problem or where there is a high concentration of infections, etc. with is part and parcel of the tracking of this epidemic. Of course, in a layperson's opinion there may seem to be little sense in this wide range of categories, but in the study of this disease, the treatment of this epidemic, and the study in how a person is affected, these categories are scientifically set guidelines to help scientists and doctors evaluate patients and the progress of the disease itself.

What other categories have you been in over the course of your infection and for how long?

If you are in Category B or C what OIs did you experience?

...as well as any other relevant discussion regarding HIV pathogenesis

I like to think I'm in a class all by myself, but ok, I'll play along.

B2. Or is that 2B or not 2B?

Infected in the spring of '97, but not diagnosed until February '01.

Nine (nearly ten) years that I know of (since diagnosis).

Don't know, but I was probably in A1 and/or A2 for at least a while in the first four years before I was diagnosed and monitored.

Oropharyngeal candidiasis, vulvovaginal candidiasis (both unrelated to antibiotic use), OHL, chronic hiv-related diarrhea. I also have herpes (since 1980) and after about six years of being poz, had to go on acyclovir prophylactic due to having as many as 4-5 outbreaks a month. OUCH! Before hiv, I got maybe one outbreak a year. Two in a year were a lot.

Also had hcv (from 1984 until 2002) which had become symptomatic almost immediately after my hiv seroconversion illness in '97. Before seroconversion, I never had any hcv related problems. (Severe brainfog, joint pain, extreme fatigue, pain on the right side of abdomen and lower chest. Most of these have been resolved for the most part since getting rid of the hcv. I still often have joint pain - hips and sometimes fingers - that I'm told is due to hiv-related inflammation and possibly lasting damage from hcv, they're "not sure". )

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Truthfully, for me, After 26 years, I really don't care about "classifications" and "Oh how many T-cells do you have? and the like. All I care about is how I feel today and how do I continue to live the healthiest and fullest life I am able to.

HIV/AIDS is a continuum. We all have the same disease. No one is better than anyone else because they have more T-cells or that they have gone for years without needing meds. Sometimes I think this topic continues the "us vs them" issue.

Truthfully, for me, After 26 years, I really don't care about "classifications" and "Oh how many T-cells do you have? and the like. All I care about is how I feel today and how do I continue to live the healthiest and fullest life I am able to.

HIV/AIDS is a continuum. We all have the same disease. No one is better than anyone else because they have more T-cells or that they have gone for years without needing meds. Sometimes I think this topic continues the "us vs them" issue.

I certainly don't think I'm better than anyone just because I've not done the meds yet and I've never had the impression that anyone here thinks they're better than anyone else because they have more CD4s or whatever.

I mostly see people feeling lucky or unlucky. Not better than, but maybe luckier than. I know I feel lucky to have done as well as I have - nothing I do (or don't do) has had any effect on it so I cannot take any credit for it. I'm just lucky, plain and simple. And I really feel for those who haven't been so lucky.

The only reason I keep track of my CD4s is because I'm not on meds and so need to keep an eye on where they're at. My bf could care less where his CD4s are at, he's only interested in staying UD. And like you, Sharkie, how he feels right here and now.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

HIV/AIDS is a continuum. We all have the same disease. ... Sometimes I think this topic continues the "us vs them" issue.

I totally agree with you - except for scientific study or gaining medical access in the American system - these classifications mean little to daily living. As far as access to medications though, these classifications can totally be an "us vs. them" situation. "Us in the C3" classification usually have easy access to meds, while "them in the B2-B3" level may not have access at all - even if meds are required.

Having that C3 classification has helped me to have access to medications for nearly 2 decades. For some people, especially those with limited income or no insurance, and at the beginnings of the b1-c1 or b2-c2 ranges, having and keeping appropriate healthcare and access to meds can be a struggle. In part that's why there is an ADAP program, to help with this disparity. I don't consider myself to be "special" by once being at the C3 level; but I do know that because of that I have better access to medications than many people at a B2 or B3 level here in the middle of the ADAP crisis who are on the waiting lists. Those are people who currently are "sick enough" to need medication yet do not have the ability to afford them and are not in the right category to receive enough assistance to get the meds. Given enough time though, even those people on the waiting lists can get access - as their health continues to decline enough to reach a C3 level (and another government level, that of being "disabled"), finally allowing for appropriate medical access to medications.

However, I'm hoping that with some of the healthcare reform to see that kind of situation change. There is talk of creating a medicaid (I think it's that and not medicare) category that is "not disabled but needs longterm medication/treatment". This would allow people to have access to meds while still working their under-paying no-insurance jobs without needing to be sick enough to be C3 or "disabled" to get adequate medical care (ie prescription drugs).

I hadnt heard of these categories before. Interesting. I guess Im a B3. Diagnosed with Aids Dec 2008 w/200 t-cells, had already had thrush, yeast infections and shingles, then had post-herpetic neuralgia from the shingles, pneumonia, persistent diarrhea, more thrush, fatigue. Started HAART right away, much improvement everywhere though they told me the aids diagnosis stays with me no matter what.

Officially, positive for 25 years. Unofficially, first doc thought I was most likely infected in 1980

1980! I know cases like yours help me to not worry so much. It doesn't take it immediately away, but it is an accumulation of stories like yours that help to build peace--like building a brick wall, piece by piece. I realize there were tens of thousand or millions infected in 1980 who weren't as fortunate. I don't want to minimize that. But, you're here 30 years later and I'm fortunate to have med options and it helps to hear stories like these.

I think the above is accurate the truth is I am not too good on dates, thro choice they seem meaningless to me although I understand their importance.

As I get older managing my body after two bouts of Hodgkins lynthoma, lipo, wasting, PN and autonomic neuropathy, theres more but you get the picture, I do realize that the care is getting harder to access , in my country UK in order to finance combo there was huge cuts to community groups and the perception off AIDS being manageable requires that one is often having to explain that one is disabled, affected by past treatment as well as an going virus.

I would welcome a catergory for the medical and government world whereby instead off detailing each and every symptom I could say AIDS CDC 3. and that was it.

That it would be understood by one and all that if I was standing up with a pleasant demeanor than that was as good as it gets.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Amen Brother! Mark I don't know how you do it, you still work & you live alone, yes it is HARD to deal with after all these years, I wish I could say the same health wise as you can, but I cannot, maybe I just didn't take care of myself as good as you have, or maybe I'm just unlucky but hey I'm ALIVE and that's still better than being DEAD

« Last Edit: November 22, 2010, 08:33:09 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Mark honey, you ARE a miracle, as a LTSer. I just think there are fewer people who RECOGNIZE how miraculous it is. I've been poz (diagnosed) since 1987; CD4 varied between 0-20 during the early 90's, prior to protease drugs; had quite a few OI's, including PCP, MAC, severe molluscum contagiosum, bacterial endocarditis, bone marrow failure, blah blah blah....too long ago, and too much to remember (and too painful).

I think I am a living miracle, except not too many people 'get that' and it is certainly not recognized in any way, by my doctor(s) or otherwise....

I owe it all to gratitude, sheer determination, and bulldog obstinacy.

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

1980! I know cases like yours help me to not worry so much. It doesn't take it immediately away, but it is an accumulation of stories like yours that help to build peace--like building a brick wall, piece by piece. I realize there were tens of thousand or millions infected in 1980 who weren't as fortunate. I don't want to minimize that. But, you're here 30 years later and I'm fortunate to have med options and it helps to hear stories like these.

I agree, I am also thankful for this AIDSmeds forum. I have learned so much from the thoughtful discussions here. We each pick up little pieces of the puzzle as we go along, advice from doctors, news on new tratments, and an invaluable living history that the LTSers on here share with the rest of us. I sure have a better understanding of what this disease is and how to go on living life one day at a time. So thank you to all members and to the admin team for creating this community that I am proud to be a part of.

Mark honey, you ARE a miracle, as a LTSer. I just think there are fewer people who RECOGNIZE how miraculous it is. I've been poz (diagnosed) since 1987; CD4 varied between 0-20 during the early 90's, prior to protease drugs; had quite a few OI's, including PCP, MAC, severe molluscum contagiosum, bacterial endocarditis, bone marrow failure, blah blah blah....too long ago, and too much to remember (and too painful).

I think I am a living miracle, except not too many people 'get that' and it is certainly not recognized in any way, by my doctor(s) or otherwise....

I owe it all to gratitude, sheer determination, and bulldog obstinacy.

I totally agree. You guys and gals that made it through the 80's with HIV are especially amazing.

Have had 12 CD4 cells, maybe fewer, a few years ago. A real buffet of OIs, diagnosed HIV in 1993, managed to progress to an AIDS dx in 1994. Absolutely no reason why I should be alive.Tried almost every medicine as they became available. Currently taking Isentress, Truvada, Prezista, Norvir, and Dapsone.

The only scientific explanation for my wildly successful ability to remain on this side of the flowers is that, even though my adherence has been total crap, I have managed to keep the wild strain of my virus more or less at bay, more or less of the time. The strain, or strains of virus I currently carry seem to be weaker, even when emerging as resistant. My incredible good fortune cannot last. I know this. I probably do not fear it as much as a rational person should. Then again, rationality and I have not always been on the best possible terms.

To paraphrase "Blade Runner," I don't know how much time I have... but then again, who does?

I remain in awe of people like Mark and Alan and other LTS folks. They did not just pave the way for the relative ease of current HIV infection - they scouted the wilderness, built the road, invented the asphalt, and paved it. And then, now, they reach back and help other people. These are giants, walking among us. Real heroes in a world terribly short of that.

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."